Sep. 1, 2013

Dr. Bill Frist

Written by

Dr. Manoj Jain and Dr. Bill Frist

Dr. Manoj Jain

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Dr. Jain and Dr. Frist invite you to join in the conversation. Click on “share your thoughts” at the end of this column at www.tennessean.com/opinion, or send your story to voices@tennessean.com.

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First of six parts that will appear this fall

A woman is dying. She is tethered to a ventilator that inflates her lungs in synchronous bursts, surrounded by a forest of gleaming IV poles. An overhead monitor beeps, and a dancing dot graphs a troublesome EKG. By the bedside — separated from her mother by blue latex and a hospital-issued yellow paper gown — a daughter cries.

Talking about death — even thinking about death — is uncomfortable for patients and families. Nearly 80 percent of us would prefer to spend our last days at home, but the majority of us will die in the hospital, and only 20 percent of us have expressed our wishes in writing.

Yet often our wishes are clear. We hope to die peacefully, painlessly, with dignity, surrounded by our family and friends, at home. While some of the details of our final days are out of our hands, there are still many choices that are ours to make.

The progression of illness which will lead to our deaths is well-studied. Some of us, two-fifths, will die with a prolonged, dwindling illness on a slow, downward slope typical of dementia or frailty. One-fifth will die with a sharp decline typical of metastatic cancer. Another fifth will die with intermittent dips, like a roller coaster, from heart or lung failure; and a small percentage will die suddenly and unexpectedly.

These numbers reveal that a majority of us have the opportunity to affect our end-of-life experiences. So how can we improve end of life here in Tennessee?

Over the next few months, we — as doctors, policymakers and family caregivers — will address the issues of end-of-life care, the hospice and palliative care services in our community, and health policies in our state and nation.

Best places to die

We know we can improve end-of-life experiences in our communities because it has been done. For example, La Crosse, Wis., has become known as one of the best places in America to die. For more than 25 years, Gundersen Lutheran Health System has pioneered an end-of-life advance-care planning program, helping people make decisions on how they wish to die and encouraging the use of hospice and palliative care services.

But for Tennessee to achieve such benchmarks, we need to first address the larger issues. The national conversation about end-of-life care has engendered fear and hampered meaningful progress for decades. We must bring the end-of-life conversation out of Washington and back into our homes, hospitals and clinics. There are no death panels. End of life is not a political issue but a personal one.

Additionally, any conversation about health care is intricately linked to health care costs, and it would be irresponsible to pretend end-of-life care is any different. We do spend a tremendous amount of money at the end of life. Almost 25 percent of Medicare’s dollars go toward the last year of life, and much of it toward the last few months.

Yet all this money does not buy us the quality of care we desire. According to a report by The Economist on the quality of death, the U.S. ranked ninth in end-of-life care, behind the United Kingdom, Germany and Canada. Furthermore, patients and families in America are exceedingly displeased with the care at the end of life.

However, when patients receive end-of-life care that is high quality and patient-centered, we save money. In La Crosse, Medicare patients have 30 percent lower spending compared with the national average ($18,359 vs. $25,860).

Palliative care

End-of-life care, in truth, is a quality-of-life question. Patients actually live longer when they receive appropriate end-of-life care. Over the past decades, we have made tremendous advances in medical and surgical treatments, yet such aggressive treatments are not appropriate for all patients.

A 2010 New England Journal of Medicine study showed that when patients with newly diagnosed metastatic lung cancer received palliative care services along with standard cancer treatment, they suffered less depression, enjoyed a better quality of life and lived three months longer than those who received standard cancer care alone.

A son whose father had suffered for weeks in the ICU before finally being referred to palliative and hospice care asked a simple question: “Why did we not talk about this earlier?”

All these facts lead to a simple conclusion. We must fundamentally change our thinking and culture about end of life — as patients, families, doctors and as a health care delivery system. The fault lies with all of us. Doctors don’t know how to start the conversation in the clinic. Families aren’t sure when to broach the subject at home.

Death is not a failure of medicine; poor quality of life in the dying process is a failure of medicine. Death is ultimately a part of life and deserves the best care we have to offer.

Next: Conversation among family

Manoj Jain is a Tennessee doctor who writes for The Washington Post. Bill Frist is a heart transplant surgeon and former U.S. Senate majority leader.